Dr. Karin Hehenberger has close to 20 years of experience in the life sciences sector. She served as an executive at Eyetech Pharmaceuticals and Coronado BioSciences, and had strategic management roles at Johnson & Johnson (Vice President, Metabolic Strategy), JDRF (Senior Vice President, Strategic Alliances), and McKinsey; as well as senior partnership roles at public (Brummer & Partners) and private (Scandinavian Life Science Ventures) multibillion-dollar investment funds. She received her MD and PhD degrees from the Karolinska institute, and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Inspired by her background and diagnosis of type 1 diabetes, she is the founder and CEO of Lyfebulb.
Tune in as Karin shares:
- that she was always in good health — but that at the age of 16, this changed
- that shortly after, she was diagnosed with type 1 diabetes
- the fear that came along with her diagnosis
- what she wishes she’d done differently after her diagnosis
- that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career
- that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously
- what qualifies diabetes patients for pancreas transplants
- how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb
- how she also realized that patients need patients — and how this plays into Lyfebulb’s community today
- how she manages the side effects of her immunosuppressants
- the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need
- the obstacles presented by the American healthcare system
- what it was like to entertain motherhood as a patient on immune-suppressing drugs
This episode is sponsored by Gena Chieco Coaching. Get 10% off Executive & Life Coaching using code INVISIBLE!
Lauren: All right guys, thank you so much for joining us. I am here today with Dr. Karin Hehenberger, who we've been very excited to have on the show. Karin is the founder of Lyfebulb, which is a patient leadership organization many of you may know about, and one with which I am an Ambassador. And she also lives with invisible illness, which he's going to tell us about. So Karin, thank you so much for joining us.
Karin: Thank you so much for having me.
Lauren: It’s an absolute pleasure. So let's start at the very top of your story. Can you tell us when and how you first realized you were sick, and what steps you took to control your health?
Karin: Absolutely. I grew up in Sweden and was never really that sick. I was a very healthy young person.
And as a child, apparently, my parents tell me, I was always happy and highly energetic and very rarely sick.
At the age of 16, I had a strange spring. I was a very active tennis player and obviously also was a student at the time. And during the spring, I had three bouts of tonsillitis. I was at home from school, and was unusually sick and weak. And I also started losing weight in ways that I wasn't at all looking for. During the summer that year, I was playing a very big tennis tournament down in the south of Sweden, and it got really much, much worse. My body weight was down 15 kilos or so, which is more than 30 pounds. And I was always lean. So I was really, really skinny. I was drinking a lot of water and I was going to the bathroom, all the real signs of Type 1 diabetes. But I didn't know about diabetes. My family, no one was diagnosed with diabetes in my family, neither really Type 2 nor Type 1. So we didn't recognize it. Or maybe my parents did, but they didn't want to. So after this tournament, that I really did well in despite all this, I traveled back to the north of Sweden. We were living in Stockholm at the time. I went to see my grandparents for a week to rest, because I was tired. Within a day, my grandparents realized there was something really wrong with me, and they took me to the local nurse, not even a doctor — because this was out in the countryside and there were a few of these nurse stations. The nurse did a urine test and saw I had a lot of sugar in my urine, and they asked us to go directly to the big hospital where there were doctors and good medical care. So my grandfather and grandmother drove me to the hospital, I think actually it was only my grandfather because my grandmother was at home taking care of my other two sisters. I have two younger sisters who were there with me; my parents at the time were in Stockholm, packing up the house — because as a family we were moving to Paris that fall. So a lot of stuff going on.
Lauren: That’s a very big move.
Karin: Yeah, it's a big move, and changing schools. So when I got to the hospital, they immediately told me that I had Type 1 diabetes, that my blood sugar was sky high. I had all the symptoms, and they needed to admit me because I needed insulin IV, I needed to be hydrated; I was in a ketoacidosis, I was really sick. So I was admitted to the hospital for the first time, the first time ever that I'd been to a hospital except for when I was born. I was terrified. I mean, absolutely terrified. I didn't know what this meant. I knew one person who had Type 1 diabetes; it was actually a fellow tennis player, and I always thought she looked so skinny. I knew she had diabetes and I connected it to diabetes for some reason. But she was a really good tennis player, so it wasn't negative. That was all I knew about the disease. But I learned very quickly all the different things that could go wrong. Which is what they told me, of course. They said you’ve got to test your blood sugar, you’ve got to inject insulin, and without insulin you're going to be dead.
Lauren: That’s pretty terrifying to hear at 16 years old, I imagine.
Karin: It was absolutely horrible. They even said to me, if you had been diagnosed 70 years earlier, you would be dead now. Because there was no insulin to be given to people like yourself. I passed out in front of the nurse when she told me that, because it was a horrible message. Within a few hours my parents came to the hospital and walked into my room, and I still remember their faces — my mother crying, my father very, very severe. They knew this was bad, and it was shown on their faces. We, as a family, really tried to learn, all of us. Myself, my two sisters. I can imagine how tough it was for them as well because all the focus was on me for a while. We needed to change our diet. I have since heard — because my youngest sister at the time was only five, I'm 11 years older — she had said to my mother … and no one told me this until recently … she said to my mother, “I don't want to eat ice cream anymore. I don't want to have any sugar anymore. Maybe I can be diabetic instead of my sister.” She thought it would be better if she would have diabetes, because I was doing so many things. And she wasn't yet. It's amazing how she was gonna take on that burden of diabetes for me.
Lauren: At five years old. Oh, wow.
Karin: It’s really horrible. But it shows her commitment to her sister and how much she idolized me at that time, and and wanted me to be healthy. It was tough. It was really tough.
Lauren: So you've spent the rest of your life since then managing this illness. Because they must have told you, this is an illness you're going to have for the rest of your life, and you're going to spend the rest of your life managing it, right?
Karin: In my case, it's a little complicated since I have a pancreas transplant. But I was told that this is a chronic disease, it will never go away. Maybe in contrast to the US … when I was diagnosed, no one told me about a cure. They said people are working on solutions, but they didn't really say, oh, there will be a cure in your lifetime.
They just said, you need to manage it tightly so that you don't get blind and you don't lose your kidneys or your limbs.
Lauren: If that’s not even more terrifying after all the news you'd already received.
Karin: Very tough. I wasn’t 5,6, I was 16. So I could also read very well and I was a very good student. So I started doing research and saw all the consequences of a bad prognosis. And what happened to people with diabetes. In Sweden, I think they do something quite well — which I did not embrace — that immediately upon diagnosis of Type 1, not Type 2, you get put in what's called a diabetes school. You go for a week. You're not an inpatient, but you go every day to the hospital and you get to meet other people with Type 1 and learn the techniques and diet. I said to everyone, including my parents, that I refused to go to such a school because I could learn myself and I didn't want to see other people with this disease. Because it really scared me to see others who lived with this disease and because my belief was that they were going to be so sick.
Lauren: Which is so interesting, because the doctors actually seem to have been giving you community right off the bat, but you weren’t ready for it.
Karin: No. I really didn't want community. I didn't want to be like anyone else with diabetes. Because I saw that as a negative. I just wanted to be like I had been before — a great athlete and a good student, and someone who didn't have any problems. I didn't want to be like those others who had the disease and needed to inject insulin, dependent on insulin. So I felt very much less than others. And I did not want to be part of that group of people who I saw were less than other people. That was a mistake, clearly, but it was my reaction as a teenager.
Lauren: I don’t think one that could be called atypical either. I think a lot of teenagers, and even adults, would have reactions like that upon hearing quite drastic news about their own health and hearing the bad news about all of it.
Karin: I think so. I think the moment of diagnosis and the first few hours after diagnosis, they’re so critical. Of course, it's important to imprint on people how severe the disease is. Because you have to take it seriously. It's a very complex message that the healthcare professionals need to give you. And I still don't know what is the best way. I think that everyone is different. And I don't know how trained the personnel is to realize how different people are. Because if I'd been a person maybe a little bit more mature, maybe I would have understood that it was important to connect. Here I was, I think pretty immature, because I was always somewhat sheltered as an athlete, as a student. I was someone who never really needed to worry, except for my own performance that I could control. And here, it was something that I couldn't control. And I felt totally lost. Because as someone who was controlling everything and doing it pretty well, I felt like I had lost my whole bearing in life. I mean, it was really tough. It's not easy to to see that within a few minutes of diagnosis that maybe this girl we don't need to scare her because she will find out, and she shouldn't be put with other people.
Because my entire life had been trying not to be like others. I wanted to be better. And here I was told that I was worse.
So it was really a tough moment.
Lauren: I'm sure. Obviously it turned your world around and forced you to change your perspective on a lot of things, I imagine. You mentioned that you also had a pancreas transplant. Can you talk to us a bit about what led up to that surgery and what role that's played in your health as well?
Karin: Yeah, it's kind of a long story before we get to that, because I was diagnosed now 30 years ago. My reaction after that shock was a very good one in the sense that I dug very deep into the disease. I decided I wanted to go to medical school, I was not going to be a tennis player.
Lauren: It shaped the course of your life after that, for sure.
Karin: Absolutely. I studied medicine, I did my PhD in record time in the area of diabetes. I came to the US to do a postdoc in diabetes research at Harvard. And I continued to work in healthcare, always focused on innovation and finding new solutions. So it drove me to do better and to use my capabilities to the benefit of others. And that's really what originated Lyfebulb. I realized that my role, maybe here on this planet, is to use my experiences not only as someone who has studied a lot, and someone who's experienced a lot in work or in business, but also someone who's experienced disease firsthand. And if I can convey that, and I can convert that into lessons and inspiration for others who are in a similar position who may not have all the advantages that I've had, I think I can do something good with something that was very bad. So my first 10 years after diagnosis, I was very driven to just show the world that nothing could stop me from what I wanted, which was my education and to be a successful professional.
Lauren: Was it something that you were open with people about, as well, from that point on that you were living with this chronic illness?
Karin: No. It took me 20 years to be open with that. The first 10 years no one knew, and I did all these things in studies. Really between 16 and 26, it was medical school, PhD, and internship and the start of my postdoc. I came to the US as a postdoc. And from then on, I didn't manage my diet, and my diabetes as well. I think it was my transition from Sweden to the US and an opportunity to kind of be a new person. And feeling that I was now in a professional setting where I was in a very competitive space that I could even less accommodate my diabetes.
No one knew I had diabetes in medical school, no one knew I had diabetes among my friends for the first 10 years.
At Harvard, and then in New York, working on Wall Street, no one definitely knew I had diabetes. And here, I wouldn't even accommodate my diabetes. In the past, I would step away, I would make sure when I had a low, I would fix it. I would do things that accommodated my disease, even though I hid it. It was difficult, but I hid it. Starting in the US, when I started my professional career, I just tried to manage my diabetes in a way, so it wouldn't need to be accommodated for. Which meant that I kept my blood sugar a little bit higher. So if my blood sugar is constantly slightly high, I never go low. And I could skip meals.
Lauren: But also don't try this at home, kids!
Karin: Yeah, it's a terrible way of managing diabetes. It’s definitely very self-destructive. It’s not good. But it allowed for me to hide my disease for another seven or so years. And then it all collapsed for me because my body couldn't take it anymore. Instead of coming out as a diabetic, and just saying, I have this chronic disease where I have to inject every day several times, I had to say, I now have kidney failure, I have eye disease. And I'm in a serious state where I'm a walking stroke risk. I may become blind in the next few months, and I may need dialysis. I needed to take care of myself. So within two years of that realization, I made a few changes. Number one, I decided I didn't want to work just in the finance of healthcare, I wanted to work as an operator, as someone who was actually close to patients and doing things with diabetes again. Going back to my roots. So I did that. I took a job with J&J and worked openly as a person with diabetes and in the space of diabetes. Now people knew I had diabetes, so I could accommodate somewhat. When there was a birthday cake, I could say no, because this is not good for me. In the past, I would have a difficult discussion, and people would think maybe I was anorectic or I just didn’t like their party. I took that, versus having the conversation. So it was easier. But it was too late. Because within two years of this transition into being more open and living a healthier life, I was told that my kidneys were now down to 10% and I needed a kidney transplant. But it still didn't show. If you're talking about invisible, when I was at my worst, I looked great. I was very thin, I was glowing, I looked successful, I was successful professionally. Maybe what I did, which was the only thing that probably showed, was that I was often declining invitations last-minute, or changing my mind. I just didn't have the energy to do everything. And I always prioritized work, and my family took a beating and my friends did. Because I knew I would still have them. And I could just be rude or be short, or as I was always very hopeful, I would just tell people, “Oh no, I can't do it tonight.” Because I was exhausted. I was too tired to do the things that a normal person my age could do, because my body was breaking down. My hemoglobin was down to 6. My blood pressure was 220/180, and I was not in good shape. So I went for the kidney transplant. My father was incredibly nice, and gave me a kidney. So we did the kidney transplant now 11 years ago in New York City, at Columbia Presbyterian. Which was a new experience, because now I was still very much in need of control. Here I was, I was getting rid of my native kidneys and getting a kidney from someone else, my father, that I now needed to really take care of, because otherwise I would be dependent on dialysis. Which I couldn't even imagine doing. But I wanted to live. That was definitely part of the plan — even though at times, many times, I was thinking if it was worth it. Because the struggle and the fight to even go on with the issues was just hard, very hard.
But getting a kidney from my father very much changed that because now I had him giving up an organ, taking a big risk — and how could I not take care of that kidney?
Lauren: Right. It expanded your sense of personal responsibility, it sounds like.
Karin: Yeah. But when I was offered the kidney, or told that I needed the kidney, at first I didn't know if I would get one from my father. I would go on a waiting list which would be more like five years, and which I probably wouldn't have survived. But during the conversation about the kidney they also said, the doctors, that if you do the kidney we recommend you do a pancreas transplant. Because the pancreas, if it's successful, will help the kidney, since you won't need to take insulin anymore. Your diabetes will be cured — if it's successful. The pancreas transplant in contrast to kidney is much less common. They do about 100 a year in the US, and it's much, much more severe surgery. I mean it's a 7- to 8-hour surgery, versus maybe one hour.
Lauren: But clearly it was something that they felt that you as a patient were more in need of, if there are that few done.
Karin: Yeah, they thought so because of my age, my kind of physical condition. I was still in very good shape. Even though I had kidney failure, my heart was good, my muscles were good. I was relatively young. And they felt that the upside of not having diabetes anymore would be so great for me, because I was a so-called ‘brittle diabetic’ — which means that my blood sugar was going up and down tremendously without me really feeling it anymore. So I was a perfect candidate in the sense that they thought I would survive and thrive with the surgery. Which has a mortality risk otherwise, the surgery. And then the other thing was because I got the kidney and I needed the kidney, I was going to be on these immunosuppressants, and those drugs are exactly the same for the pancreas. So since I was already doing this regimen of the immunosuppressive therapy and also other therapy that prevents infections for a period of time, I would know the drill, and I wouldn't have to change any drugs when I had gone through the surgery. So there was a lot of upside. The downside was, what if I didn't survive the surgery? What if the surgery doesn't succeed and I have surgical complications? So I looked at all that and I looked at the surgeon's record, and I decided that I would take the risk, get the surgery, and go for the pancreas transplant.
Lauren: I’m wondering, because you know there are people who are listening who might be Type 1 diabetics, going, oh, so I can cure my Type 1 diabetes and just get a new pancreas. Surely I can go ask my doctor? But it's not as simple as that, is it.
Karin: No, not at all. You're not really eligible for a pancreas transplant unless you are in need of a kidney transplant, which was my case, or you are so-called ‘brittle diabetic’ where your blood sugar goes low and you don't notice it and you have a strong risk of passing out. So ‘brittle diabetics’, people with severe complications … it could be that they're about to go blind or they have kidney failure, that’s when pancreas transplants are done. And you don't do it in children at all. You don't do pancreas transplants in someone who's less than 18. Because you need to be on immunosuppressants for the rest of your life. That risk, I mean, I had no choice because of my kidney. So the immunosuppressants that I'm on, means that I have a higher risk of infection. Now with Corona, I'm definitely at a higher risk. I'm probably about double or three times mortality.
If I get Corona, my risk of dying is much higher than someone who is not immune-suppressed.
I also have a higher risk of lymphoma and skin cancers. But to me, it was really, really worth it. The kidney saved my life. But my pancreas transplant made my life worth living again, since I now had total freedom from my diabetes.
Lauren: From your insulin injections, especially, right?
Karin: Yes, absolutely. I do not need any exogenous insulin anymore. And my a1c, which is the measurement of long-term glucose control, is less than 5. So my pancreas transplant really enabled me. But I think more importantly, it gave me a few insights that really made me change my direction. Because after my pancreas transplant … I was now working in corporate, not on Wall Street, but in a corporate setting where I was either chief medical officer or someone who's looking at innovation for a big company … and I enjoyed my work. I was doing good things for people in general. But I was not at all in control, because I was working for a company and I didn't use my experience as a person with disease at all, in these settings. I was using my experience as a scientist or as a business person. So after my pancreas transplant, I realized that there were so many things that I had struggled with, living as a person with diabetes. Your whole concept of having an invisible disease, it was so true. I had something where no one thought … they thought I was the picture of health. And yet, I was making 200 to 300 extra decisions a day because of my diabetes. And when I no longer needed to take insulin and measure my blood sugar, and fear the lows and the highs, and do accommodations for my diabetes, I suddenly had all this energy. Instead of being, most of the time, very tired and sad, I was happy. I could walk down the street and just feel inspired and happy because I wasn't worrying all the time. That was my immediate reaction. But then, since I’m analytical, I started writing down … what are the things that are better. And I would never have understood, or even realized, that the things that I was accommodating, that I was doing every day because of my diabetes … I didn't realize that they were not normal for everyone. Because 20 years with the disease, it became normal. And that was one of the big pillars for the development of Lyfebulb. Because what we are realizing is that patients can be innovators. The realizations of what is the daily burden with disease, no one knows that better than those who live with the disease on a daily basis. So if you can articulate the insights in a way that then can be analyzed and then can be addressed through innovation, we really can come up with better products that address the unmet patient needs, versus the unmet medical needs. And often those are different. An unmet patient need may be totally different than the unmet medical need that a doctor is saying is the biggest problem for a person with diabetes. That may not be the biggest problem that that person with diabetes actually is experiencing. So, the two big insights for me, through my own personal experience with the disease, that were the foundation of Lyfebulb … number one, patients need patients. I never connected with another person. And I think if I had, I would have been a better patient. Instead, I did deep research and tried to figure it out myself with experts who were not patients. But if I had connected with another patient, maybe I would have felt that it wasn't so bad. Diabetes is just a disease, like MS or cancer. We are all affected by something. No one is perfect. And you know, having diabetes is just a part of life, not really something that is making me a total pariah.
Lauren: It’s interesting that you use the word ‘pariah’, because it sounds like you've gone from this state of constant shame about living with this illness, to really embracing it as part of who you are, and using your voice to amplify the discussions about invisible illness in general, but especially about Type 1 diabetes — because it has had such an impact on your life.
Karin: Absolutely. Now I spend every day talking to other people. And it's important to say, it's not just Type 1, because I realized when we started Lyfebulb … I started with diabetes, but I realized pretty quickly that if I only focus on Type 1 diabetes, it's really elitist from my perspective, and it's saying that that's just the most important disease, and it's not.
If I speak to someone who has MS or someone who has Crohn's disease, or anxiety or depression, or cancer, I learn that they have it pretty tough as well.
It actually can make you feel better, that you can help someone who may be going through something. And I can also learn, because there are many commonalities. The invisibility of these diseases … that's a commonality versus anything else. And I also think that there are some things that are affecting us all, like the strange fatigue of chronic disease; it's something that affects many people with autoimmunity. The strange regulation of temperature. Now, why are people with chronic disease often cold? It's weird. So I think that from a scientific perspective, and also from a psycho-social perspective, it's very healthy to connect with others who have not just your own disease. It's more humane. So I think the ‘patients need patients’ is a core concept for us. And number two, patients can be innovators. As I mentioned, after my pancreas transplant, I realized there was so many things I could do now, and that I was no longer bothered with. And then I realized, why don't we try to innovate around those things, that affect the person on a daily basis. And that's why we started our innovation challenges and embrace patient entrepreneurs, and not just regular entrepreneurs. I have a lot of respect for anyone who starts a company, it's really tough. But those who are patients and are doing it, they're leaving their day job, and they're going about finding a solution to a problem — like you do. You’re addressing an issue that people wouldn't know, unless they were living with the disease. It's really brave to do that. And I think it's really something that should be encouraged more. Because when you do it, you're also inspiring others that health can become wealth if we do it well. And the more we talk about it, and the more we try to help others, I think the less we start focusing too much on our own issues — which is the worst thing we can do.
Lauren: Absolutely. I think that's very well said. So, we know that you've become an incredible patient advocate and gotten other patient advocates to join you and created this wonderful network of patient leaders. It sounds like your dad, obviously, offered you one of his kidneys. Your grandparents were very supportive in getting you medical care when you were first diagnosed. Did you find that you needed a personal advocate at any point in this journey to diagnosis and maintenance, living with Type 1 diabetes, or do you think that you sort of shrugged it off and became your own advocate in a way as well?
Karin: Well, I've always had very strong connection to medical people. I've always had a good doctor. And I had good mentors, strong mentors, in business, that I connected with. So I've been very lucky that I've had female mentors, I’ve have wonderful doctors who I trust. But I've never had a patient advocate, someone who's another individual who was living with the same disease — because I never connected that way. So no, I think I became my own advocate. And I realized that through Lyfebulb really. I spent time at the JDRF; I spent two years there. It was more difficult because I had a pancreas transplant, so it wasn't so easy to identify with me because I was no longer diabetic. And therefore, it was confusing. Although, I'm still Type1.
If I don't take my immunosuppressants, I will get my disease back.
If I lose my pancreas transplant through rejection or fibrosis, I will get my Type 1 back, and it probably will happen in my lifetime. That's the lifetime of a pancreas transplant; it's probably not the lifetime of a person. We don't know that. But I wish I’d had an advocate. But since my personality is so controlling, and so independent, and I was rejecting the whole concept of being sick, I just never reached out.
Lauren: But it's so great that being around other patients has really enhanced, or softened, your relationship to chronic illness. It sounds like you've gone from, as we've said, that place of shame to this place of not only acceptance, but excitement, about communing with people who are living with similar illnesses. And that's a real driver behind the work that you do, and very exciting for all of us to be seeing.
Karin: Oh, right now I'm living my best life. Because I get to interact with other people, who I learn from every single day. The more patients I get to speak to, the better it is. And every time, I learn something. If you ask me one thing I like to do every day, it is to learn something new. I love that. Here I'm learning from those who come from so many different backgrounds. I speak to people who work at home, I speak to people who are nuclear physicists. And they all are experts in their own disease. That, to me, is fantastic. They can be articulate, they express themselves differently. Some people are like me, and it’s more difficult to get the emotions out. But some people are incredibly emotional, and then you need to understand what the facts are. It's really great. It gives me a lot of pleasure. And I also feel accepted. I feel accepted probably for the first time in my life, because I never sought it before. I never sought it. I didn't want to be accepted. I wanted to stand out. And now I feel very much that I have a community. And my community is not diabetes or transplant or whatever. It's the community of people with chronic disease who want to connect. That's the community, and it's wonderful.
Lauren: So what does a typical day look like for you now? I know at a certain point you would have been giving yourself a bolus, or running to inject your insulin in places. But it's very different now. I know you mentioned you're on the immunosuppressants. How are you balancing the demands of work and life as you're managing potential symptoms?
Karin: I don't really have symptoms other than the side-effects of immunosuppressants. And those, to me, are the biggest ones, and the really bothersome ones are the gastrointestinal. I take my immunosuppressants in the morning and in the evenings, so 12 hours apart. And they unfortunately trigger side-effects that cause upset stomach and nausea. So I do have to balance what I eat; I have to still be very cautious about what I eat. That's something that I do have to think about every single day. Other than that, I think I have a regular life. I have a two-year-old and I balance my work life with taking care of her — which takes a lot of time, but gives me a lot of pleasure as well.
Lauren: So in this journey to founding Lyfebulb and becoming one with the chronic illness that you used to live with, it sounds like you were having to justify more to yourself than to others that you had Type 1 diabetes. Did you ever find yourself in a situation where you were confronted and you had to explain to someone what was going on with you?
Karin: I remember especially once when I was really sick. This was when I was about to collapse totally. I went to the emergency room. I was in Stockholm in Sweden at the time, and that day was the Stockholm Marathon. I went to the emergency room because I realized I was very, very sick and I needed to get help. I had sneakers on; I wasn't wearing nice shoes. And they said to me, “Oh, did you just run the marathon?” And I said, “No, I'm quite sick.” “So okay, you can just go over there.” They really didn't think I was sick. And then they finally took my blood pressure. My blood pressure was, as I mentioned, 220/180, and they said, “What's wrong with you?” I said, “Well, I have diabetes and I probably have kidney disease.” And they immediately took my blood and they said, “Well, your hemoglobin is down to 6; you need a blood transfusion. And your urine is full of protein, so you have this massive proteinuria.” And they admitted me on the spot.
But when I walked in, in my sneakers, they thought I came from the marathon and I was just abusing their time.
That clearly was a misunderstanding. I have to say I have probably encountered that many times, that people have not thought I was sick, but it has never bothered me. I prefer to be seen as someone who's not sick, versus someone who is sick. But what has bothered me … I don't complain much, and if I say to someone who is in my family, or my husband, “I'm not feeling well,” and they don't take it seriously, that's not good.
Lauren: It sounds like by the time you're actually saying ‘something's wrong’, something really is wrong and you need to be taken seriously, immediately.
Karin: Absolutely. Very much so. But I have to say, I think it's very hard for family and care partners and people around you, because I've seen the opposite as well. When I had diabetes, if I was a little irritable or I was just short or something, they would say, “Oh, are you low on blood sugar again? Is your blood sugar low?” Not everything has to do with your disease, and I could just be irritable because they were bad. Or, you know, something else went on in my life. And I think that's the topic of definitely a podcast or something — because we need to educate care partners on how to treat people with chronic disease. Because it's not easy. They want to be very careful and not tell you that. “Oh, you're sick and you can't do this and that.” You don’t know how many people have told me I need to leave New York now, because of Coronavirus. And I don't want to leave New York. But then if if they don't say to me, “Oh, are you worried about Coronavirus?”, then I also get upset because they should care about me. And the same thing goes with food. If I go to the home of someone and they serve me a lot of sugar and spicy food and I can't eat that, I get offended because they should know that. But then if they only serve me bland food, and everyone else gets something good, I would also feel like they're not treating me right. So it's really hard. I think educating your partners and family and friends on how you want to be treated … it’s also the patient's responsibility.
Lauren: Very much so. I know you've had these experiences in and out of health care. Have you ever experienced any undue prejudice or privilege in the healthcare system, particularly with regard to your self-identity? In other words, because you're a white female. Can you see your circumstances being perhaps different if you’d presented otherwise in various instances in which you've had contact with the healthcare system?
Karin: Oh, yeah, absolutely. I'm privileged being a white female, and also an MD. I present as a doctor, and therefore I get treated more as a colleague, and I get respect immediately.
If I don't say I'm an MD, I could be seen as a white, blonde bimbo.
And that's also not very good, but at least I’d get attention. But I may be patronized, versus now I'm being very respected. And so I think I have a lot of privileges that, if I had been of a different race, or living in a different city or environment, I would probably not have had the same. So yes, I think where you live, what you look like, your educational level, and how you speak, really affects how you're treated in the healthcare system. I also think it affects outcomes. If you're in the system as an in-patient and you cannot articulate well what your symptoms are, and what your disease background is, I would be so worried, because then you really need an advocate with you. Because when you're really sick … I remember I passed out … I also have a pacemaker because my autonomic function was impaired by diabetes, so I needed a pacemaker. And I passed out a few times on the street, and I was taken to the emergency room. They didn't know I had a kidney transplant, a pancreas transplant, and they wanted to give me IV contrast — and that could have ruined my one kidney. I knew that I couldn't have IV contrast, and I had to fight not to get it. But if I had not been educated, and if I had not been respected in the same sense, I'm sure things could have happened. So I think you can't be too sick, and you can't be too old and weak, to be in the healthcare system and be a survivor. Then you really need a friend or a family member. So yeah, it's tough.
Lauren: Speaking of the healthcare system, and given the number of other patient leaders who you've spoken to … I'm sure you have a lot of opinions on this … I'm wondering where our healthcare system, from your perspective, is working for patients? And in what ways it's falling short and requiring improvements that even perhaps you might have ideas about immediately?
Karin: I have also experienced the Swedish system as well as the US system. So I have had the two very different systems. I think the US system is incredibly good when you have a very severe condition. Because you have the world's experts here; you can get the best possible care if you can pay for it.
Lauren: Aye, there's the rub!
Karin: Right. I would not have been able to have had such successful surgery if I hadn't had insurance and I wasn't able to access these doctors. When I was looking to do my pancreas transplant, they had done two pancreas transplants at the hospital where I did my kidney transplant in New York. One of the best places in the world to do surgery in New York City. But they'd only done two. I did other research and I found that the University of Minnesota had done 1,000; the same doctor had done 1,000. So obviously I tried to go to Minnesota because I wanted to be number 1001, versus number three.
The US is the place to go if you have access and you can do the research and you can pay for it.
In Sweden, everyone gets good care, everyone has the same insurance. We all get basic treatment. However, even if you really need it, you have to wait. I mean, people can wait for months to get a hip replacement. If you are in New York and you can get access to Hospital for Special Surgery, you can do it next week here. So it really depends on what category you are, what is better. I would say the other thing, in Sweden … because the government pays for your insurance — not the government, we all pay, I mean people, taxpayers pay — prevention is very important. So doctors and clinics all emphasize prevention. While in the US prevention is definitely not paid for, and it's not at all emphasized. Because doctors are paid for intervention, not prevention, and therefore prevention is just not something that is normally offered. You have to go to alternative doctors, alternative therapists or treatments — and they are almost always not covered. So if you want prevention and you're not naturally a person who keeps a diet and does exercise, then you really have to pay out-of-pocket. And that is even more difficult for those who do not have access to capital, to resources. So I think the discrepancy in the system … it's very, very wide in the US. The top treatments, the acute treatments which I think are probably the best in the world, are offered to those who can, and prevention is also offered to those who can get them. I know for a fact that because I have access, I was better off in the US. But if I had been in a different position, I would have not. And you could also say that maybe if I had been in Sweden and never come to the US, maybe I never would have needed a kidney transplant. Because I would have behaved very differently. I wouldn't have been running around mistreating myself, trying to work so hard, never take vacation and mismanaging relationships, and all that stuff that we do because we want to hustle.
Lauren: It’s interesting you say that because it seems like work/life balance … it's the US that's creating the problem. This idea that we have to be constantly hustling is a very American ideal. It's very individualistic, isn't it. Whereas there's more of the attitude in Sweden that health care is a human right. Which is not something that we've taken on psychologically here in the US.
Karin: I think it's beyond health care being a human right in countries like Sweden, Switzerland, Norway, Denmark. It's quality of life as a human right. People take their vacations, men take their paternity leave; maternity leave is very generous. But it's very hard to compare such small liberal countries with the entire United States. It's easier to manage the system when you’ve got 8 million people, like the size of New York City. Versus 300 million people who come from very different backgrounds, different educational levels. It's hard. You can't just take one model and apply it to another country that is so different in its origin and in the way it was formed. I came to the US for a reason. I came because there was opportunity in the US that probably didn't exist in Sweden. And there was a certain attitude in the US that still doesn't exist in Europe — which is the attitude that you can fail and still make it, and everyone has an opportunity if you're healthy and successful. So if you’re a young successful or strong individual, and you want to be an entrepreneur or you want to work in a special industry, the US is incredibly attractive. If you're older or sick and you're not as competitive, it's really tough. That may not be fair, but it's a really tough environment to be in the US, I agree. And the differences between the very successful and rich and the ones who don't make it are just getting greater. We're seeing that more and more also in the European countries, because we're seeing more immigration. When I grew up in Sweden, there was one Black girl in my entire school. She was adopted. Everyone else was blond and blue-eyed essentially; some were brunettes. So when you grow up in an environment like that, it is easier to manage, versus an environment where everyone looks different.
I, for one, I'd much prefer an environment where everyone looks different. You all have an individual right to express yourself.
If you go to an environment where you're all treated the same, I'm sure that there will be issues with that too. So we need to find something that is addressing both the positives and the negatives.
Lauren: I agree. Absolutely. It's almost like we need to find a happy medium between these two systems, isn't it, in terms of way of life but also in terms of access to medical care. Neither is perfect, but maybe we can find a way to get something in the middle that will work for everyone.
Karin: Yep, absolutely, I agree. I think there may be. I think Germany and Switzerland are closer. They do have a basic health care that everyone has, and then you have the opportunity to add to that. I think that's good because everyone should have access to health care; there should be no doubt about that. But you also need to be able to add to it.
Lauren: Absolutely. I think having those options open makes it more appealing for sure. So, as we come to the end of this interview, I like to wrap things up with a couple of Top Three lists. And I was wondering what your top three tips might be for someone who suspects, perhaps, they have something off. Maybe they've been diagnosed with an invisible chronic condition, maybe it's Type 1 diabetes in particular. What would your top three tips be for individuals who are managing chronic illness?
Karin: So they've been diagnosed with it, or maybe they don’t know yet?
Lauren: Maybe they don't know yet, but maybe they're entering that world of invisible illness. Just what kind of advice would you give to people who are either on the precipice, or are really in it and are feeling a bit lost?
Karin: So I think number one is to really get access to information, good information, to educate yourself as much as possible. I think knowledge is real power. And before you start fearing things, or even speaking to others, just get yourself educated as much as you can. To me, that's very important. Number two, I think, find a community or find at least one person to connect with. If you are a person who likes to be in groups, then find a community. If you're a person like me, who likes to maybe be one-on-one and really get deep into things, find a few people that you can speak to one-on-one. Maybe one who's more on the medical side, one who’s a patient, one who understands how to navigate the system, legally, financially, all that kind of stuff. Find your little network, build your network. I think the not-for-profits, the patient organizations, are often very good because they do have those kind of things built up, and within each disease area we always recommend to go to to them, because that's what they do. So I think number two is really get yourself a little network. And then number three, maybe even more importantly, understand that this is part of your life now, but it doesn't define you. Make it part of your life. You can't put it into a little bucket and say, this is what I do one hour a day. You’ve got to realize that you have to change. I think it's wrong to say, “Oh, you can be exactly the same but you now have diabetes, or you now have MS." It's going to affect everything you do. So you'd better realize that and just say … this is part of my life, but I'm going to be a great person, I'm going to continue to be a good person. But I will accommodate, because I want to live.
And not just live, but I want to thrive. I think to thrive with a chronic disease, you need to make it part of you and not try to fight it all the time.
Lauren: Absolutely. Which it sounds like you've also done, so you're a great example of doing that, too. The last Top Three list is … top three things that give you unbridled joy, that you're totally unwilling to compromise on. So this could be guilty pleasures, secret indulgences. It could also be comfort activities. Three things that give you all the happiness in the world, that are absolute uncompromising choices in your life.
Karin: Okay, number one, two and three … but I'll just give you one … is time with my daughter.
Lauren: I was waiting for that!
Karin: There is absolutely nothing that makes me happier. I just think about her, and I smile, I laugh, I almost cry. She makes me so happy, and I will never compromise that time to do anything for her. Number two is really being with my family, also including my husband, because when the three of us are together, it's even better. So the unity of that; being with her alone is really incredible, but being together, the three of us, is remarkable. So that is number two for me, the unity of our little family. Number three, which is more of a guilty pleasure, is … I actually love my total alone time as well — I'm in bed, I have a cup of tea, and I have something that I enjoy, like a piece of chocolate or a piece of cheese, or something that I don't eat much of but just a small piece, and I watch a really bad movie or TV series. Something where I do not need to engage my brain at all, I just watch it. It could be like an old episode of Dynasty. That ages me.
Lauren: Not at all. I watch stuff like that, too, so I get that.
Karin: But I really need it. And I do it when she's asleep, or he's away. It’s so amazing. I totally relax.
Lauren: Oh, that's wonderful. Do you mind if I ask also about what it was like going through the process of having your daughter while managing immunosuppressants and everything. I mean, that has to have been something that you were very aware of, and it had to be complicated?
Karin: As with everything in me, it's very complicated. I spent a lot of time going through IVF to conceive her; I actually think I did 12 IVFs. It was a process that I think if I had not been with my husband, probably I would have given up. But he, from day one, said, “This is happening, and this will be successful.” He had a total optimism toward this, and it eventually worked. But it wasn't just the IVF. I never told my nephrologist that I did the IVF, because I was recommended against it. Because with only one kidney and with all my issues, even taking the hormones would affect me negatively and was a risk. But I did it anyway, which I'm very happy to say, and I did it at a very low dose so I wouldn't get overstimulated, I wouldn't push my kidney too hard. So we eventually succeeded to create an embryo that was healthy and was our little girl. And then came the second process, because I was not allowed to carry her. So we needed to find a carrier for our little child, because if I were to carry a baby, I would have to remove my immunosuppressants — because they would be toxic.
And then I would lose my kidney and my pancreas — and I could not take that risk.
So we identified an amazing lady who carried her for nine months, and we are in constant contact still. It was a successful pregnancy, and we flew out to see her being born, and she's been she's been ours all along. That was the whole idea. We could have adopted, and I think that's wonderful to do that and maybe we would have if it hadn't succeeded? But I don't know if we would have. I think this was the only way that would work for us, and we succeeded.
Lauren: It’s lovely.
Karin: Yeah. It was tough.
Lauren: It sounds like it was definitely a journey, as so many pregnancy journeys are, really. But it's wonderful that it gives hope to those of us who are living with chronic illness who are going … gee, will I ever be able to have kids, and if I do, how complicated will it look? It's really wonderful that you’ve done it.
Karin: I think that is a topic that really requires more conversation; I never talk about it really. Because it is so taboo. And if anything, I have received more criticism about that, because people think it is wrong to implant an embryo into another person and have them carry your child. I understand that for religious reasons. In Sweden, for example, it's illegal; you cannot do that in Sweden. You cannot have a gestational carrier. Most countries in Europe, you cannot do that. Because it's considered not right to the woman who's carrying your child. I have to say for someone who doesn't want to go through a pregnancy because they don't want to gain weight, that I think is, you know, it's their decision. It's not as valid to me. But when you cannot have a child in any other way, I really think that if there is a woman — and not only a woman, but her husband and her family — and they agree to do this, and it actually gives them pleasure, as well … I think it should be allowed. I am very happy that we did. It makes me happy all the time that we did. But it wasn't easy.
That time of going through the IVF was incredibly tough, as well. It was just a lot of disappointments.
Lauren: Yes, well, I mean, that's what I hear about the most in relation to IVF, in particular … that it's an emotional rollercoaster, and you're on all these hormones that can affect your body in myriad ways. So I'm just so happy that you guys got to do what you wanted to do for you, and you're happy and in love with your little girl. There's no better joy than that. So, congratulations.
Karin: Thank you.
Lauren: Is there anything else that you'd like to share with us about your work with Lyfebulb, about anything in your life at all before we sign off for today?
Karin: Well, I think if you are interested in in connecting with others across these different chronic diseases, we work in diabetes, in inflammatory bowel disease, Crohn's and colitis, multiple sclerosis/ MS, migraine, cancer, really across all different cancers, and mental health, especially depression and anxiety. And most recently now, also transplantation, which is a really interesting area because those individuals don't really have a home. When you have diabetes and then you get a pancreas transplant, you're no longer really part of the community as a diabetic. And the same thing when you get a heart transplant; you’re not no longer a heart patient, you're a transplant patients. You have other issues, like I have with my gastrointestinal issues, or skin cancer … I have to remove a basal cell next week. So, if you want to be part of the community, please reach out to us. Reach out to me directly. I love hearing from patients. My email is Karin@lyfebulb.com. We have these incredible ambassadors, of whom you're one. We want to have more ambassadors, people who spread our message and share our mission and our ethical compass as well. We really try to inspire through innovation, because I believe strongly that anyone who's living with a chronic disease is that disease’s expert, and if we can find solutions to the problems that you experience — that’s our goal.
Lauren: And where can listeners find Lyfebulb and the other various social handles that you've got?
Karin: So our website is Lyfebulb.com. And on that website, you can connect through to our social channels, but they're all lyfebulb. So Instagram @lyfebulb, Twitter, Facebook, as well as LinkedIn. And my channels are essentially there too, but it's just Karin@lyfebulb.com.
Lauren: We'll link to all of this on the episode page. But in addition, there are now some new offshoots with some of your social handles as well, which are all linked on the website. So I'll make sure that everyone can get to those. Karin, it's been such an absolute pleasure speaking with you today. I'm so glad we were able to do this, and we’re just really excited to watch the work that you're doing with Lyfebulb continue to grow and to be a part of it.
Karin: Thank you so much, and thank you for all you do.